Blog

Our blog features weekly profiles of people who candidly share the ways autism has changed their life — as siblings, parents, artists, travelers, teachers, immigrants, spouses, professionals, advocates, and more.

Dane Dougan is the chief executive of Autism New Zealand. In this profile, we learn more about New Zealand's autism community and the great efforts to promote inclusion, support employment, and more.

Tell us about yourself.

I grew up in Lower Hutt, New Zealand, not far from where the Autism New Zealand national office building is now. I'm married with three kids, and love sports — especially rugby. In New Zealand lots of communities are focused around local sports clubs; whole families get involved and I really enjoy that aspect, as well as playing the game. I have undergraduate degrees in accounting and commercial law, and a masters degree in management studies. I've been working as a chief executive for almost 10 years now, and worked in the sports sector before joining Autism New Zealand in 2013.

What is Autism New Zealand and how did you become involved with this organization?

Autism New Zealand is the go-to organisation for all things autism in New Zealand. We have 16 branches throughout the country, and skilled outreach staff at each one. These staff offer individualised support and strategies to empower people with autism and their families.

We offer exceptional education and training programmes throughout the country — for families, and for health and education professionals. After having kids, it became more important to me to work for an organisation that makes a difference in the community, and I am grateful to Autism New Zealand for providing that opportunity.

What challenges do families affected by autism face in New Zealand, and what support does Autism New Zealand provide?

The first major issue families face is a very long wait for an autism diagnosis. We know that the earlier there is a diagnosis, the better the outcome for the child — in terms of placing appropriate supports and accessing services and subsidies. In New Zealand, the waiting times vary from region to region, but can be up to 18 months. And there are very few services offered for adults, for diagnosis or follow-up support.

Once they have an ASD diagnosis, families discover there are myriad services offered by different NGOs (non-government organisations) and health, education, and welfare government bodies here in New Zealand. Navigating these systems, and getting the best out of them can be very complicated. Our staff are really knowledgeable about what's available, and how to access it. Again — as there is lots of regional variation, the fact that our branch staff are really clued in about their local communities makes a massive difference.

Autism New Zealand hosts a number of programs, like Way to Play, that support parents and caregivers. What activities, resources, and programs have been most appreciated in your community?

Our Way to Play programme is definitely very popular — it's incredible to watch the change in people throughout the course. As a dad myself, I think Way to Play is brilliant. I love to have fun with my kids, and we know that lots of parents, caregivers and teachers find it really hard to 'play' with a child with autism. On this course we show them really simple strategies to start to play, and increase their child's general engagement. The feedback we have from this course (and all our others) is remarkable — people regularly get in touch to let us know how much their engagement with their child has improved.

In terms of programmes, Autism New Zealand also runs LEGO clubs for slightly older children, where social skills and play are reinforced through carefully guided LEGO activities. Parents and children really love these clubs — kids who may otherwise feel isolated say that the LEGO club is somewhere they feel like they really belong.

In the global autism community, there is a lot of conversation on how to support adults on the autism spectrum — in terms of social inclusion, professional development, and personal independence. In New Zealand, what opportunities and/or challenges do adults on the spectrum experience?

To be honest, the support for adults are not great in New Zealand — it is one of the things we hear most from our community. Adult diagnosis is certainly not prioritised by our health system, and there is often little or no follow-up support available. We know that many adults with autism feel marginalised and are keen to work and get more involved with their communities. Our outreach staff try to support adults with autism to do this and we run support groups for adults in many regions.

We were fortunate to secure a small amount of funding to pilot an employment support service in Auckland and this has gone really well! We've supported 18 people with autism in to work or further training in the last 16 months. We hope to get ongoing funding for this service, and to be able to roll it out to more regions. We acknowledge this is an area where there needs to be improvement, both at a government and an NGO level.

What has been your proudest moment as the CEO of Autism New Zealand? What do you enjoy most about your work?

My proudest moment is a project that's currently underway: the conceptualisation and development of Australasia’s first Autism Resource Centre. This will be a centre with an autism-friendly fit-out, where people with autism can get all their services in one physical location — from diagnosis and therapies, to employment support. We have secured a building (which currently houses our national office and Wellington branch) and are currently working on fundraising for the fit-out! We hope to open in late 2017.

Working at Autism New Zealand, I enjoy the fact that it is easy to get out of bed and go to work every day. I know that as organisation we change lives. In the NGO sector, it can feel like you can never do enough to meet the needs of all the people affected by autism — so any time we get feedback that we've made a difference for one person, one family, one school or community, for me, that's massive.

subscribe

Justin Robbins is an autistic advocate who champions inclusion, awareness, and acceptance. In his TEDxTalk, "Who's Afraid of the Big Bad Autism", he inspires us to rethink what it means to be autistic.

Desirae Pillay's daughter, Savannah, has autism and cerebral palsy. This led Desirae toward a career in Augmentative and Alternative Communication (AAC). Based in South Africa, Desirae is a passionate autism advocate.

Meghan Hussey works at the crossroads of disability inclusion and international development, and her younger sister has autism. Learn about the personal and professional paths of her globetrotting journey in autism awareness.